My prayers and love are going out to you, your husband and family. I can only imagine how strong you are.
Hi how are you and your husband doing? Well i hope.
Not so good. As we speak my husband has days maybe weeks to be alive
Hi im just so sorry. My partner has just found out she has lung mets 16 months after surgery. What a horrible disease this is, i just can’t believe that no cure or at the very least some effective treatment has been found after all these years. I has so much empathy for what you both have and are going through. So sorry.
There are organizations that support research on finding cure for synovial sarcoma. E.g. my favorite is http://pnbustanyfund.org/page0/ as this fund is managed by people who was impacted by decease. Currently they are screening researches on NIH to find which ones are promising.
Honestly this cancer as we speak right now has no cure. My husband has endured numerous rounds of chemo radiation and nothing has shrunk or made anything go away. This cancer is horrible.
We started a Fund for our son who passed from this horrible disease, too. There can be so much hope for some if you can keep it out of the damn pleaural lining and other inoperable places. My son had mets to the pleura. We contribute to research in Dallas at the children’s hospital where he was treated. I hope it helps everyone with SS one day, though. -Gage Overton Memorial Fund
Thanks @Judy, you’re a fighter and your attitude is amazing. I understand you had your adrenal gland taken out- we have a new member in our community @glendaly3278 who has recently had an adrenalectomy (along with a retroperitoneal dissection), and is hoping to get some support and information on how to move forward. @glendaly3278 would love to hear any tips you may have!
I know you haven’t been here for a while Judy, how have things been? We are all rooting for you, and hope to hear back from you soon!
-Arjuna from ModSupport